Coping With Frontotemporal Dementia

“It’s losing control of managing your own life. And when you can recognize that, when you’re aware of the loss of that control, it’s very, very hard.”

Matt was 44 when he was diagnosed with frontotemporal dementia (FTD), a rare type of dementia that eats away at behavior, judgment, and personality. A music minister in Alabama, Matt realized something was wrong when he no longer was able to plan and make decisions. An appointment with a neurologist helped confirm that he had FTD.

Matt is still working on accepting his diagnosis. It’s difficult for him to perceive personal changes that his family can see more clearly, so he’s never sure if a mistake he makes will be attributed to his FTD and cause him to lose what he terms as privileges. As a parent of young children, Matt’s doctor has also advised him to take a more observational than active role in case his behavior adversely affects his kids.

Fortunately, Matt still retains the ability to manage some of his own behavior when he recognizes issues. His efforts and the support of his wife and kids help retain the family dynamic. And, as Matt himself says, “[T]he challenge is to take every moment I can, live it to the fullest, and go from there.”